Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Shocking Story #2

concerned-mom061

Recommended Posts

gfp Enthusiast
gfp
Posted
Oops! :lol: Didn't mean to pry!

Well you really weren't to know... I just thought people should realise why I was being evasive... I guess everyone understands if i put it like that :D

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 109
  • Created
  • Last Reply
Nancym Enthusiast
Nancym
Posted

I'm getting a bit confused over the story, is the child a celiac/gluten sensitive? This might be something to bring to our local celiac organizations. Was a good diagnosis for the child ever received?

What a story! I'm sure that the public would be very interested in hearing the details should you ever wish to share the entire story. This is every families worst nightmare.

concerned-mom061 Rookie
concerned-mom061
Posted
  • Author
I'm getting a bit confused over the story, is the child a celiac/gluten sensitive? This might be something to bring to our local celiac organizations. Was a good diagnosis for the child ever received?

What a story! I'm sure that the public would be very interested in hearing the details should you ever wish to share the entire story. This is every families worst nightmare.

Well, I have all of her lab work that I recieved this past Friday at the hearing. After reviewing the records, I feel a lawsuit would be so easy to win!! I don't know how to diagnose celiac, but my daughter has a lot of tests that came back favorable for celiac. I have no problem sharing the whole story.....I just wasn't sure if everyone else wanted to hear it. I am planning on going to the media early this week. If you'd like more information then e-mail your phone number, and I'll call you. It would take to long to write it all. I do feel Celiac moms and dads need to be aware!!!!

Bree

gfp Enthusiast
gfp
Posted
Well, I have all of her lab work that I recieved this past Friday at the hearing. After reviewing the records, I feel a lawsuit would be so easy to win!! I don't know how to diagnose celiac, but my daughter has a lot of tests that came back favorable for celiac. I have no problem sharing the whole story.....I just wasn't sure if everyone else wanted to hear it. I am planning on going to the media early this week. If you'd like more information then e-mail your phone number, and I'll call you. It would take to long to write it all. I do feel Celiac moms and dads need to be aware!!!!

Bree

Bree, if I can suggest start a new thread specifically on the tests...

Also we can offer you endless help on coping with celiac, it seems so hard at first and its really not...

Try and keep a thread on each type of question (gluten-free living, test results etc.) and you get better responses that way.

After what you've been through we will all pull together I'm sure and help you understand celaic and how to cope...

Incidentlally.. before you do a press thing... make sure you throw out your "contaminated" stuff.. ;) it won't hurt publicity wise... and it will really help you coping wise!

You know you might think of being tested yourself as well...

Judyin Philly Enthusiast
Judyin Philly
Posted

Bree

After I was dx'd with celiac disease, my chiro dr. came and helped me go through my entire kitchen.

She took all the food that we could not eat any longer and took it to her church 'needy' pantry so that the food would be used by someone of need. This might be good for the publicity too..

I don't know if you know of anyone near you, like in a local support group, who might help you do this. It was easier when i started the diet to just have things I could eat to 'grab' and cook. She had me eat only organic (or non processed or seasoned) meats, fruits, vegatables, apple/eve cranberry juice potatoes and rice for 4 days till i could get a handle on the diet and what to look for in the labels. She also went through the gluten-free trader JOes shopping list with me and told me the good products to get. There might be a whole foods by you also.

I hope you can get someone local to help you. PM me where you live and i'll try to find a local support group.

Judy

plantime Contributor
plantime
Posted
Both of you....

If you want I will set you up a website where you can help share this with other moms and also post things like cases you find oput about....

I hope both of you keep up the good work after you get your kids back... so if either of you or both want I can make you a website (obviously for free - hope I don't need to say that) where you can post items to help out people I the same situation....

Just drop me a pm and I can make one in a few hours and help you get started.

I think a website for this cause would be an excellent idea! It would give other parents going through this a place to go for advice and information.

jerseyangel Proficient
jerseyangel
Posted
I think a website for this cause would be an excellent idea! It would give other parents going through this a place to go for advice and information.

I think so, too. Steve, what a generous offer! :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


concerned-mom061 Rookie
concerned-mom061
Posted
  • Author
I think so, too. Steve, what a generous offer! :)

Yes....I think a website would be awesome. Though, I've gotten some awesome advice from this site as well as others, it certainly would have been nice to have just one website to focus on.....not that I wouldn't still come here and those other places..it's just that I had so little time and going b/t this and that one became hard at times. Let me know what I can do to help.

As far as the press goes....if any of you want to give me some ideas on what I should say about Celiac and it's history of being undiagnosed.....then just let me know. I am new to this whole thing, and I can take all the advice you guys are willing to give. I am so grateful to you all!!

I am from Leesburg, Georgia....right outside of Albany. I am working on getting the court report now so that it may be used to help others. I can tell you that the judge dismissed the whole case, w/out anyone from my side, including myself and the father, ever being heard. The judge threw the well known so called "hired gun" for DFCS, Ms. Louisa Lasher, completely out of court and stated that she was not welcome back in her court room. This was a huge victory for the wrongly accused MSBP moms. Although it took 30 days and 3 hearings, my side never had to put up a fight, for the judge stated that no evidence was found that indicated that I had hurt or neglected my daughter in any way!! I'll have the whole story for anyone who wants to hear very soon.

As far as me being tested.....honestly, I can't afford it right now. B/t lawyer fees, normal living expenses, and the medical care I do recieve for my hypertension, I don't have any extra money to do any extra testing right now. I will one day, though. I have many symptoms....but they are mild. It's my daughter and my little brother that I worry about. Also, my mother died last year after fighting an unknown illness. After I was first told about the suspicion of celiac disease in my daughter, I did research and found that my mother had just about every symptom, as well as most of her sisters. I am trying to get one of them to get tested now so it could help w/Kylies' case as well as theirs.

Kylie just turned 1 year old, and I've been told very few infants are diagnosed w/celiac. However, she has so many things that points to celiac. I will get all of her information together, and maybe one of you could help me. Plus, we go to the doctor tomorrow to see what our next step is.

Bree

Nic Collaborator
Nic
Posted

Bree, just in case this of some interest to you, some other forum members have been discussing how to get Oprah to do a show on Celiac. A story like yours might be a good lead in to how undiagnosed and disrespected an illness Celiac is. You may not want to go "that" public but I thought I would throw it out there.

Nicole

GFBetsy Rookie
GFBetsy
Posted
As far as me being tested.....honestly, I can't afford it right now. B/t lawyer fees, normal living expenses, and the medical care I do recieve for my hypertension, I don't have any extra money to do any extra testing right now. I will one day, though. I have many symptoms....but they are mild. It's my daughter and my little brother that I worry about.

After I was dx'd with celiac disease, my chiro dr. came and helped me go through my entire kitchen.

She took all the food that we could not eat any longer and took it to her church 'needy' pantry so that the food would be used by someone of need. This might be good for the publicity too..

I don't know if you know of anyone near you, like in a local support group, who might help you do this. It was easier when i started the diet to just have things I could eat to 'grab' and cook. She had me eat only organic (or non processed or seasoned) meats, fruits, vegatables, apple/eve cranberry juice potatoes and rice for 4 days till i could get a handle on the diet and what to look for in the labels. She also went through the gluten-free trader JOes shopping list with me and told me the good products to get. There might be a whole foods by you also.

concerned_mom,

If you have symptoms, you don't have to have a formal diagnosis before going gluten free. After all, people make dietary choices all the time without medical consent (how many of your friends talked to a doctor before going South Beach or Body for Life or whatever?). And, if you decide just to make the house gluten free, you'll be giving your little brother a chance to heal as well. Of course, he's old enough to cheat on his diet at school, and you won't be able to control that, but you might be able to get him to agree to a trial run. Check out the book "Saving Dinner" by Leanne Ely for great (and easy) dinner recipes. Not all of the recipes are gluten-free, but a lot of them are (or else they are very easily modified).

Congratulations again on the wonderful outcome of your trial . . . . Glad to hear your judge's reaction!

Betsy

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Bebygirl01's topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...
    2. Bebygirl01
      - Bebygirl01 posted a topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...
    3. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than ...
    4. knitty kitty
      - knitty kitty replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1. Thiamine is needed in the immune response and production of antibodies. Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease. Thiamine can be destroyed by sulfide...
    5. knitty kitty
      - knitty kitty replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      Increasing symptoms after going gluten free

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products. We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life. Sudden weight gain (or weight...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,005
    • Most Online (within 30 mins)
      7,748
    anjie patterson
    Newest Member
    anjie patterson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
×
×
  • Create New...